Positive Experience with Aromatase Inhibitors
I took Tamoxifen for two years before having to stop due to sustained sleep problems, severe allergic itching, and significant cognitive difficulties (memory deficits, executive function problems). Most of those and other issues have resolved over the past few months during which I stopped any adjuvant therapy. My MO would very much like me to try taking an AI for two to three years. My oncotype was a 4, which she believes would be maximized if I could stay on hormonal treatment for a few years longer. I am very worried about associated side effects and another reduced quality of life like I had before. I rarely read about people's positive experiences with any AIs....understandably, those who post are dealing with concerning issues. I would like to ask those who have minimal or no side effects to post their experiences with AIs. Are you out there?? Please share for those of us who need to hear the up side of taking AIs.
Thanks, Lacey
Comments
-
Hey Lacey12- I take Arimidex and have little to no SE's. I think there are tons of people out there that are the same. Like everyone else I stared at the bottle for two weeks afraid of what might happen but I knew if there were problems I could switch to another or God forbid stop. I decided it would be really foolish not to try and low and behold...no joint pain. It does effect sleep in different ways on different nights and it's gotten alot better since the first couple weeks but if you just accept it, you can work with it. Mostly I just wake up once a night and within an hour can fall back. Rarely anymore but sometimes I'll take a 5 mg Melatonin to help. The only other SE is hot flashes and they also have gone from 10 or 12 a day in the first couple of weeks to about 2 to 4 and somedays only 1. I think if you go into knowing that if something crops up you just work with it you'll be fine. I think we allow the fear to take over and we forget that we actually are in full control of these meds. Just jump in and see how it goes! Good luck!
-
I was a little achy/flashy when I first started Arimidex, but just kept moving & didn't think that much about it. After about 6 months, my body had adjusted & I did fine. I completed the 5 years with no short or long term problems. My bone density held up (I exercise a lot), my blood pressure, cholesterol etc. all stayed in the normal range. Hormone negative ladies & people with almost every other kind of cancer would give just about anything if there was something more they could do after their initial treatments. I was very glad that there was something I could take on a long term basis which would really reduce my chances of ever having to go through the cancer experience again.
-
There were a couple of threads recently that listed non-catastrophic experiences with AIs. Perhaps I can find one or two and bump them up. I have been fine.
Remember, there are 3 to choose from and if the first is not tolerable, a different medication might be OK for you. You can always try and then quit. Not to make the attempt would be unwise in my opinion.
-
I had problems with aromasin and arimidex but have been on femara for the last year. Initially I had some minor joint pain with it and a little stiffness. Walking and yoga helps a lot. I started having muscle pain in my legs and, through some experimentation, figured out it was the combination of a statin and femara that caused the muscle pain. I was taking both meds at the same time. Now I take femara in the morning and crestor at night and the muscle pain has gone away.
-
Hi Lacey, I have been on Femara for a year now and I am doing very well. I'm glad that you are asking people to share their experiences and encourage you as you start this phase of your treatment.I have experienced stiffness and joint aches but they are mostly when I first get up after sitting, sleeping or driving and after about 20 or so steps, I have my mojo back. I also had some insomnia, but that was fixed by just taking the medication in the morning instead of at night. My vitals are good. I won't have a bone density test for another year, so not sure about that but I am not worried. Just happy that there is this treatment available to me. I feel so strongly that you have to up your activity level when you take AI's. Regular exercise makes a big difference for me. Plus, I am able to maintain my goal weight which is another way to reduce BC risk....and you just feel better when you exercise and you look good! Don't anticipate having problems. I think breast cancer treatment is tough. For many of us, it is a year of surgery, chemo, radiation and at the end of active treatment, we tend to have a case of PTSD. Make sure that you take care of your emotional and social health during this time, stay active, and do things that make you happy. I don't think a positive attitude can prevent or cure cancer, but I do think a positive attitude helps us cope better and enjoy every day more.
MsP
-
Add me to the count of women on Arimidex and doing well. I have been on it for about 7 months. I had some hot flashes, initially but those have stopped.
-
Hi Ladies, I am SO appreciative of your thoughtful and encouraging comments about your experiences on the adjuvant treatment with AIs. It sounds as though you have all found functional ways to manage whatever SEs you might have experienced. It is encouraging to hear from sisters who do not have debilitating symptoms, or have had them diminish over time. I totally GET the PTSD factor that you mention, Ms.P, yet I was fortunate and sailed through my surgical and radiation treatment, missing only a total of three days from my demanding (and beloved) job over those months.
It was my tamox regimen that I started a month or so after radiation that changed my life for the worse.....sleeplessness (always slept soundly before cancer), significant skin, and other allergies, and as I struggled through the second year, a level of cognitive fog that was just scarier than anything. I also had other less significant issues that were certainly manageable.
My MO is a compassionate woman who worked closely with me to try to manage the various SEs. A meds I tried for the sleeplessness resulted in a heart study due to side effects from that. Clearly I am sensitive to meds.
. So now I am (unhappily) on a low dose of pravastatin to prevent any cardiac issues (my mother had an event in her seventies....Oy!). Eventuallymelatonin helped me get some hours of sleep, but nothing like I've been able to log in without any meds since taking a several month vacay with MO permission.
Last year, she recommended that I start working with a trainor at the hospital fitness center to try to boost my energy level....tho one does not gain energy with exercise but no sleep.
I was already losing weight, and have dropped almost 40 lbs over the past year and a half. Well, I married exercise (and was able to since I retired from my job...due to my exhaustion....and had lots of time) and practically became a gym rat since then. The energy level did not improve until I kicked Tamox to the side of the road, but it is great now. My BMI is right where it needs to be and I am as fit as I have ever been....and I am sooo thankful for that fitness center referral, where I do my aerobic, weight work and take a great stretching class. I was even able to ditch the Celebrex I had taken for many years for hip, knee , and back arthritis. I still get bad hand pain and in fact that was why MO put me on Tamox instead if an AI immediately. That even broke through the Celebrex over the years....and it is my only pain issue...and a big one.
So anyway the exercise is all good....and it sounds like I should do well given my movement routine. However, when I hear about weight gain with AI takers, and things like the muscle pain that stops a close neighbor from being able to complete her brisk walks, I cringe in fear! Have no idea what I'll do with worse hand pain than I have now. And am hoping that I will be able to initiate and complete tasks....or even read a book......something I lost on Tamox....but have somewhat regained.
I really do hear the up side of having a treatment available, (Ruth, I always enjoy your positive comments on the Aromitase ? thread) and guess I should really try it rather than take my chances with a recurrent rate of 20-25% without any further treatment. I guess since I'm close to 70 years old, I worry about spending my last years with a terribly reduced quality of life similar to the two I lived while on Tamox. I became a different, unhealthy feeling, low functioning person, hate to lose what I have recaptured, but I guess the alternative is not good.....that is, if there are cells lurking!
As I said to my MO......it's such a crap shoot! But yes, a much better one than sisters with triple neg have to face. Again thank you for your experiences and wisdom! And sorry to go on so......you can tell I'm currently obsessed with this decision.
-
* Eat a serving of dried plums (ie prunes) a day...they actually BUILD bone density
* come over to 'The Lets Post Our Daily Exercise' thread of the Fitness Forum for some exercise buddies (ladies in all stages of treatment & beyond) for some encouragement & exercise buddies
* I didn't gain any weight, I didn't get 'foggy' mentally (or no more so than I was before I started it anyway!)
* I am a very light, restless sleeper & do occasionally take a prescription sleeping pill (was bad before Arimidex, during Arimidex, and after Arimidex....drats!)
* Once I log off, I am going to find my Raisins & Gin Recipe for Arthritis type symptoms & will post it here. You might want to try it even if you don't go on Arimidex.
* You won't know how you will react unless you try it. You can always quit if it is too awful, but we all know what will happen if cancer comes back, so it is definitely worth a shot!
-
This is a 'recipe' my aunt found. She and my mom both used it with great success in dealing with arthritis symptoms.
Raisins & Gin Arthritis Remedy
To prepare gin-soaked raisin, first empty one box of dried white raisin in a shallow container. Only white or golden raisin should be used for this recipe. Then pour enough gin into the container to cover the raisin.
Cover the container and keep it covered for 7 – 10 days to allow the raisin to steep in the gin.
Allow all the gin to evaporate to leave gin-soaked raisins in the container. These raisins keep well when refrigerated. The popular advice is to take nine of these "drunken raisins" every day. Most users report improvements in arthritis symptoms between 1 – 8 weeks of using this remedy.
Why it works:
1. Golden raisins- the ONLY type of raisins worthy of the recipe- require sulfur or sulfides in their processing to make them golden. Sulfur is an active ingredient in 2 effective natural arthritis supplenents: glucosamine sulfate and chondroitin sulfate. Golden raisins come from sultana grapes and are cultivated under the name Thompson seedless grapes in the United States.
2. Sultana grapes contain proanthocyanidins which are thought to help fight infections and reduce inflammation. Grapes also contain resveratrol, a powerful anti-oxidant that is being studied for many of it's disease fighting properties.
3. Gin is flavored with juniper berries and juniper berries contain Terpinen. Terpinen has anti inflammatory properties. The essential oil that is in juniper berries contains more than 100 compounds including myrcene (an anti oxidant), catechins (anti-oxidant), and flavanoids (anti oxidant). Test tube studies have shown that juniper berries can inhibit prostaglandin synthesis. Prostaglandins help mediate an inflammatory response and increase the sensitivity of nerve endings to pain. By inhibiting their production, a reduction in pain can occur.
-
Thank you ruthbru!
I had seen the soaked raisin idea in another thread and appreciate the explanation for why it works. Will definitely be trying this. Maybe my persistent shoulder tendinitis will benefit from trying this.
Will also check into the exercise posting thread now that I'm a solid convert. I think I saw that when I first found BC.org but was not as "religious" about my exercise regimen as I learned to be.
Off to the gym now.....with DH since we share "my" trainer which works out well for both of us.
Am starting to feel more intrepid about trying the AI......not sure which one MO will prescribe.....another "craps shoot", I guess.
-
Ruthbru, I have a box of Sun-Maid California golden raisins, but they have no mention of being "Thompson" seedless grapes. Is there a difference, or can I use these for the same purpose? Also, I am careful about any alcohol intake these days....is that not a concern with these "drunken raisins"?
Thanks!
Lacey
-
I believe as long as they say 'Golden' you are okay. I think that 9 raisins a day would not be a problem if you are just trying to avoid alcohol. There is only a negligible amount involved. If someone had an alcohol addiction, then they should probably avoid it. (I know when used it cooking, the alcohol is cooked off. I don't know if that is the case when it is being soaked into food without the heat part).
-
Great Ruth! So I am all set with my golden raisins and even stopped at the local liquor store and bought some gin...let the soaking begin! This is such an interesting "remedy"........always wonder how things like this get discovered! We'll see.......
-
Sharing this Snopes link because of the Paul Harvey funny further down in the entry :0) Enjoy!
-
Hahahaha! Meanwhile, my raisins are soaking......;)
-
Well, it won't hurt you & might help. I know both my mom & aunt swore by it. They were getting those arthritis bumps on their fingers; and they went away after they started the raisins. I am going to have my DH try it too because he is having lots of trouble with a knee. And as one of the Snopes people suggested; if it doesn't work, you can just dump the raisins and drink the gin.
-
Ruth: I'll start my raisins soaking now to prepare for the joint pains I anticipate. Thanks for responding to my timeline question by the way.
-
I am in agreement with Ruth on most stuff but still need to buy the gin and raisens!
I ended my dang 5 years on the AL but I also became a gym rat! who would have thought!
-
I just put some in the fridge to start them soaking for DH. Maybe I will have to eat some too as a preemptive strike and/or buy some tonic & drink the left over gin.
It will go okay, mort. As you see, there are many things you can do to minimize/deal with SEs.
-
Ruth, I didn't put my little soakers in the fridge last night, but is that where they should go through the 7-10 day soaking process? I am sure I can find some room in DH's small beer fridge in the basement which would seem appropriate for drunken raisins!
I also have those finger bumps, and have had two surgeries to remove some. This would be great if drunken raisins could help those unsightly bumps be less painful.
I had a little attitude setback last night when I came across a thread that talked about AIs and deQuervain's syndrome, which I needed to have surgery for right after the birth of my first son, 37 years ago. I had forgotten about it. It was excruciatingly debilitating and the thought that Arimidex could have me revisit that and potentially need more surgery to correct it left me in a slight panic. Of course it is all hormone related. Oy!
On a positive note, I called the ins. co. today and learned that there is no copay for any of the AIs since it is considered chemotherapy in this state, and thereby not treated as other prescriptions which require a co-pay. Learned about this last year when my former ins company sent me a check for the co-pays I had paid for Tamoxifen before they honored the new legislation about that. So when I get over my crazed cowardice about these drugs, at least I will not be robbing the bank to pay for them. Wonder why more states don't pass that law? I feel horrible for people I've seen post how expensive these drugs are for them.
It will be a fun experiment to see how we all (and any DHs involved) do on our drunken raisins. Thanks again, Ruth!
-
Ruth: I'll start my raisins soaking now to prepare for the joint pains I anticipate. Thanks for responding to my timeline question by the way.
-
You are welcome. I know too many people who would have given anything to be able to take something after their initial treatments to lower their chance of recurrence. We DO have that something available; so in that respect, we are really lucky.
-
Ruth, I have seen you explaining the boozy raisins for 6-10 months now. I finally bought the raisins & there are soaking as we speak. I have the big, ugly arthritic knuckles on my fingers, DH has horrific joint & disc disease. Plus we like gin ! Sounds like a winner.
Thanks for always being a positive voice on the threads.
-
Thanks, Holeinone. We will all be positive after we start on Gin Therapy!!!
-
I couldn't remember if the raisins were supposed to be in the fridge or not during the soaking process; so I googled, and it seems that you leave them out, covered (but not with plastic wrap, one site suggested to cover them with a kitchen towel) until the gin is evaporated (about two weeks) and then refrigerate when they are ready to eat. I also found out that there is 1 drop of gin in the daily 9 raisin dose.
-
Woops! Getting the plastic wrap off now! Details, details!
-
Since everyone will be starting at about the same time, it will be interesting to see the results!
-
OK Ruth......back to raisin reporting......
My little golden babies are looking pretty drunk.....just the slightest bit of thick "syrup" on the bottom of the casserole dish. Should I wait longer until the dish is absolutely dryish or get them into the fridge and start the 9 a day?
Anyone else starting theirs yet?
-
They sounds ready to eat. I have Thursday marked down on the calendar as the day they should be ready for me to start spooning them to DH.
-
Curious to hear everyone's experience. My DH has RA and would love to find him some natural relief.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team